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stillriding

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About stillriding

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    Sydney Australia
  1. Hi Buttons Yes, my WBC is sitting at the low end of 'normal'. But I am on a lowered dose of MTX just in case. Glad I am not the only pin cushion!! Cheers Simone
  2. Shelley I have never noticed that, but I did just have a chuckle. Thanks for that. Also, most of us in here are under a secret log in name so I guess that's not too embarrassing.... :)
  3. I just wanted to say, thanks for this post. I have the fat little sausages for fingers and winter is hard for them too. But they're mine and they still work, so I'm pretty happy about that.
  4. Noooooo! not pathetic at all. I think we all have our things that freak us out. Mention MRI's and I'll probably pass out! (heart beat increasing just thinking about it) Update on the WCC - worth posting in case someone reads in the future, my specialist now believes it was the actual virus that I had that caused my count to drop. She has had three other patients since present with lowered counts who also were unwell. Possible. I guess when "normal" people get sick they don't march off for a blood test. Those with a lowered immune system do! Feeling like a pin cushion at the momen
  5. Hello Amanda, Thank you for your concern. My count has returned to the 'normal' range. It took exactly two weeks from my last methotrexate (MTX) injection! I rested, took 10mg of Folinic Acid/day and stayed away from public confined spaces. My specialist does not think it was the MTX and I had a second specialist opinion that also agreed! I have not resumed my weekly injections as I'm a little too nervous to do this until my WCC (white cell count) increases. My specialist agrees. Interesting though is I have a friend with MS as she doesn't take antibiotics as they muddle up her med
  6. Hi! I posted this on the Australian Sclero Forums and would like to ask a wider audience: Just wanted to know if anyone has experienced a massive reduction in white blood cell count as a result of using methotextrate? Apparently I am low enough to be admitted for IV antibiotics and add another specialist to my list? Currently I am on antibiotics and spent last week in bed fighting (so I thought) the chest infection that I couldn't shake? Any reassurance would be greatly appreciated. Thanks SJP Sclero - my fat little hands; AIH; Mixed connective tissue disorder Diagnosed - July 2
  7. Hi I have had a liver and muscle biopsy and luckily avoided a heart biopsy! I won't even start on the number of MRIs, CT scans, ultra sounds (my fav), blood tests... , etc. I think I am lucky too. The liver biopsy I decided was necessary to determine the level of trouble my liver was in. I had mild pain and recovered quickly. The muscle biopsy I felt was not crucial for diagnosis. I was started on very high dose prednisone before the pathology reports had even come back and I could not even get hold of the results until 6 weeks later. By then I was well into 50 mg prednisone a day
  8. Thank you Jo and Robyn for such speedy replies. The PDS always scare me however I chose one sentence that seemed the most encouraging "Bone marrow recovery typically occurs within two weeks after the withdrawal of MTX." So hopefully next week will see an increase in my blood count. Cheers Simone
  9. Hi Just wanted to know if anyone has experienced a massive reduction in white blood cell count as a result of using methotextrate? Apparently I am low enough to be admitted for IV antibiotics and add another specialist to my list? Currently I am on antibiotics and spent last week in bed fighting (so I thought) the chest infection that I couldn't shake? Any reassurance would be greatly appreciated. Thanks SJP Sclero - my fat little hands; AIH; Mixed connective tissue disorder Diagnosed - July 2011
  10. Amanda Thank you for sharing your grieving process. You are not alone. Yes, I have also said goodbye to my previous life and I actually commented to a friend of mine that I feel like I have lost 9 months of my life. She actually corrected me and said "no you are transitioning". I gave her an odd look, but the more I think about it I realise that she is right. I may have come out of the high dose prenisone phase, but really I am transitioning my life and using my new network, new hobbies and new body to start over again - but differently. I secretly suspected in my pre-illness life tha
  11. Hi Steve I was wondering if you made contact with the Scleroderma clinic in Sydney? I'm off to see my Liver doctor next week, but haven't yet made contact with Sclero experts. Also how are you going? Cheers Simone BTW Jaggers I loooove Tasmania. It is beautiful.
  12. Happy Valentine's Day to everyone who reads this post. I love this forum as it reminds me that I am not alone!! I am sending you all love.
  13. Hi Steve, Sorry to hear of your diagnosis. I thought I would say hi as I also started my journey similar to yours. I also live in NSW-Sydney and think our weather is probably okay for this odd disease. Mind you I have removed skiing from my favourite sport list! After I had my carpal tunnel operations my hands just never returned to 'normal'. They remained puffy and looked a bit odd. I was also very fit at the time. I am 36 and a mother of 2 young children. My recent diagnosis was not Chronic Fatigue but Sclero/Auto Immune Hepatitis/Polymyositis. After coming out of the fog of high dose pre
  14. Great advice! I saw my general practitioner and yep ended up on the antibiotics as well as upping my reflux meds. But I was advised against letting the illness run its own course. Thanks.
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